"Not for tomorrow…but perhaps the day after!"
Updated: Aug 30
Hello, my name is Armelle, I don’t have VCP disease, but I fight for these patients every day.
I have the honor and the luck to be the Chief Scientific Officer of Cure VCP Disease.
This community has taken me by my guts and has stolen my heart.
Please join Armelle in raising awareness for VCP disease.
Join the I Can Movement and/or support her in her efforts...because YOU CAN!
About a year ago, on my way to LaGuardia airport, I answered an open position advertisement, more as a wink to my past than out of necessity; I had my own organization dedicated to rare diseases, but this ad intrigued me, muscular disease, neuroscience... the world in which I started my scientific career many years ago!
The job description matched my daily work in my organization, so my finger clicked: automatic sending of my CV…and I jumped on a plane to a retreat on a strategic plan for another rare disease.
A week later, I was talking to Nathan Peck, then Allison Peck, both smart, efficient, no fuzz, and straightforward; that was it. Finally, I found a community I wanted to stick with.
I live in New York but was born, raised, and studied in Paris, France, where I did my Ph.D. in Neuroscience at the Institute of Myology in the Hospital La Salpetriere.
I chose a career in the pharmaceutical industry at Jansen Pharma and Johnson & Johnson.
I was a group leader in cloning and expression, first in the neuropharmacology department and then in the metabolism department, leading drug discovery projects and working on new technologies and intriguing diseases.
I put the pharma industry on hold after my son was born; the same year, he was diagnosed with a disease.
My dad was also diagnosed with an ultra-rare disease; he joked that he won, his disease was rarer!
My wife Annette (a biochemist) and I looked deep into clinical trials and talked to scientists.
There was nothing there for my son or my dad - and no treatments.
There are very few scientists working on these diseases.
The world of rare diseases revealed itself to our family.
We went on a roller coaster of emotions and physical stress with our toddler son and his older sister (by three years) in tow.
We went from hospital to hospital and country to country.
We went from fear to hope and then back to bad news, creating more frustration.
Our family was tired, had no answers, and wanted off this ride. My scientific mind was baffled.
We moved to Italy, and I started a new career as a bronze sculptor.
My dad was a wood sculptor; it runs in the genes!
I could share with him my experiences from my exhibitions, transporting my work pieces on a boat on the canals for the Biennale in Venice, the newspaper articles, the critics, the spirit, the technic, welding or not welding, the art.
Five years of a tremendous bond before he left us.
Shortly after my dad passed, we moved to New York and started to actively work in the rare disease field, with Annette working as CSO (and now president) of a rare disease organization on neurofibromatosis.
I began creating my own organization, Plan 4 Rare, dedicated to helping small organizations craft their strategies and design road maps for drug discovery.
Eleven years later, I look at Nathan, Amy, Cammie, Serge, Todd, Katie, Jeannie, Eduardo, Brian, and all of the VCP disease patients, and I want to move mountains for them.
I want to find the treatments I couldn’t give my dad. I want to give them to VCP disease patients.
I will move one rock at a time and move that mountain, I know it is not for tomorrow…but perhaps the day after!
I CAN’T MOVE science all at once, but I CAN MOVE one project at a time in our scientific research to find treatments and a cure.
I CAN MOVE physically for those who can’t and will swim to raise awareness and funds in the Cure VCP Disease organization’s I CAN Move-A-Thon.
I CAN fundraise for our projects to produce the tools necessary to start evaluating molecules, gene editing, and other therapies.
Together, we CAN move science!
If you feel compelled to donate, please make a donation here.
Thank you for your help. Thank you for your hope.
Yours in Science,
Armelle Pindon, PhD
Director of Scientific Engagement and Collaboration
Cure VCP Disease, Inc.
Join the I Can Movement and/or support me in my efforts.
Please join me in raising awareness for VCP disease.